The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
The widely-read journal Nature Reviews, in its specialized Neurology publication recently featured an article with a summary of the current state of knowledge and research related to neuroimmune illnesses that occur in children, including autoimmune encephalitis. Over a dozen experts collaborated on this paper. A sample of interesting points, which also largely apply to adults …
Despite much study centered around the antibodies that cause autoimmune encephalitis, there are still many unanswered questions. One of them is exactly how the severe symptoms of this disease are produced. Physicians conducting research in Berlin, Germany and Jerusalem, Israel have together conducted an observational study of patients with anti-NMDA receptor AE as compared to …
Texas Children’s Hospital’s “Annual Day of Hope” was well attended and a great success! Around 100 patients, family members, faculty and staff attended this event, lead by Eyal Muscal, MD, pediatric rheumatologist at TCH. Families mingled over lunch, children enjoyed creative activities and a talk was given by Dr. Muscal on the current status of …
Many autoimmune encephalitis survivors and family members long to know what caused the illness. Some causes are known, some are not. Among the known causes of anti-NMDA AE are ovarian teratomas and a few viruses, particularly the herpes simplex virus. Studies have shown some patients who develop herpes simplex encephalitis (HSE) go on to develop …
Two physicians from the Mayo Clinic have just published a paper for clinicians discussing the diagnostic testing available for the many autoimmune neurological illnesses including AE and its various forms. They also included treatment approaches used by their institution and many others. A few highlights include: These disorders often develop rather quickly and produce many …
I am a survivor, sometimes I feel weak but after all I have been through, I know I am stronger than I think I am. When I feel pity for myself I remember that there are people who have gone through worse situations than me. When you cannot change or control the situation, you must …
We are thankful that studies are underway around the world on AE and its many subtypes to better understand the disease and develop new treatments. Recently an international group of physicians worked together to study 103 patients with antibodies to LGI1 and faciobrachial dystonic seizures, made up of those for whom the Oxford Autoimmune Neurology …
We are excited to announce Texas Children’s Hospital’s upcoming “AE Family Day of Hope” on July 28, 2018 in Houston, Texas. Children are welcome and activities will be provided! This day will be filled with educational information from physicians, nurses and neuropsychologists, therapists and child life staff. This day has been organized to bring together …
A recent article in Neurology Now, a publication of the American Association of Neurology for laypeople, notes many children and adolescents are continuing to experience cognitive problems, fatigue and behavioral problems even after recovery from anti-NMDA receptor AE. They observed these issues are affecting academic performance and quality of life in a Dutch study of …
AE survivors and family members had a unique opportunity to ask questions of two physicians in the field during Florence Forth weekend. Anusha Yeshokumar and Eliza Gordon-Lipkin were generous with their time and joined us by video conference. Their current interests are in many aspects of the disease, but a primary focus is long-term outcomes …
